Children's participation rights and the role of pediatric healthcare teams: A critical review.

AIM: A critical review examined how childrens participation rights as represented in the United Nations Convention on the Rights of the Child inform the work of pediatric teams in healthcare settings. METHODS: We systematically searched peer-reviewed literature on the enactment of child participation rights, within the context of pediatric teams. Articles were evaluated using the LEGEND (Let Evidence Guide Every New Decision) tool. Data extraction and analysis highlighted themes and disparities between articles, as well as gaps. A total of 25 studies were selected. RESULTS: We reviewed studies from around the globe, with the majority of papers from the UK. Qualitative and mixed methods approaches were administered. The following observations were made: (1) limited language of children's rights exists in the literature, (2) lack of information regarding the composition of pediatric healthcare teams and how they work with children, (3) children's perspectives on what constitutes good interactions with healthcare providers are replicated, (4) minimal references to theory or philosophical underpinnings that can guide practice. CONCLUSION: Explicit references to children's participation rights are lacking in the literature which may reflect the absence of rights language that could inform pediatric practice. Descriptive understandings of the tenets of pediatric interprofessional team composition and collaboration are necessary if we are to imagine the child as part of the team along with their family. Despite these shortcomings, the literature alludes to children's ability to discern desirable interactions with healthcare providers.

Exploration of the advanced preparation nurse-mother role in care of children with chronic disease: A narrative inquiry.

AIM: To explore the lived experience of advanced preparation nurses (APNs) who are mothers (APN-mothers) as they seek care in the Emergency Department for a child with a chronic disease. DESIGN: Qualitative, Narrative Inquiry. METHODS: Narrative Inquiry was used to examine critical self-reflections of four (n = 4) APN-mothers. Directed by a question guide, participants engaged in the Narrative Reflective Process through metaphoric and artistic means. RESULTS: Participants identified salient challenges associated with their experiences. Narrative threads that emerged include feelings around being discovered, unfair expectations by healthcare providers, feelings of guilt and the tension from competing roles: APN and mother. CONCLUSION: APN-mothers represent a unique population with enhanced knowledge, skills and judgement; however, they indicate that there is insufficient communication and interprofessional collaboration between parents and Emergency Department staff. Further research is needed to foster and improve therapeutic relationships between APN-mothers and healthcare providers. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Findings can inform the development of family centred care guidelines for healthcare professional parents and their children. IMPACT: This study explores the experiences of an understudied population. This research will impact APN-mothers, healthcare professionals in the Emergency Department as well as nursing students and researchers. REPORTING METHOD: EQUATOR guidelines and SRQR reporting method used. PATIENT OR PUBLIC CONTRIBUTION: APN-mothers, caregivers and support persons of children with chronic disease enacted investigator-participant roles and were involved in each step of the study process. In addition, some patients (participants' children with chronic diseases) were included in data collected.

Seeing the pandemic through children's eyes: Exploring Turkish children's views on COVID-19 pandemic by focus-group discussions.

BACKGROUND: The direct and indirect effects of the COVID-19 pandemic on children and youth people are well documented. Little is known about children's experiences of the pandemic in their own words. We aimed to explore Turkish children's experiences and views about the pandemic, across private and public educational systems. METHODS: Six focus group discussions were conducted online with 30 children aged between 7 to 18 years in 2021. Children were enrolled through snowball sampling technique according to developmental age groups. A thematic analysis was conducted. RESULTS: We identified five themes: Compliance with public health measures about preventing the spread of COVID-19, changes in daily routines, emotional responses to the pandemic, distance education, and adaptive responses. Overall, children were well informed and receptive to the public health preventive measures with the exception of older children's tendency to disregard physical distancing with friends. They reported frustration with those who did not comply with measures and believed that the authorities should strictly enforce public health requirements. Emotional responses comprised fear of family members and themselves being infected, anxiety produced by the uncertainty of the virus, and the loss of social support. There was a perceived disparity between students from public and private schools regarding academic self-competence. Positive aspects of the pandemic included positive interactions with family members and the acquisition of new hobbies. Although most children acknowledged the support of their parents to deal with challenges, children of health workers were particularly isolated in terms of emotional support. CONCLUSION: Our findings offer additional insights and validate previous research on the negative and positive effects of COVID-19 from the child's perspective across private and public educational systems. This study contributes to global advocacy efforts aimed at understanding the impact of the pandemic on children.

Hiding and seeking: Children's lived experiences during COVID-19.

A qualitative study explored the perspectives and lived experiences of school-age children during COVID-19 using a child rights lens. Twenty children between the ages of 7 and 12 participated in open-ended, virtual interviews. Our hermeneutic analysis found children's right to play and education were severely compromised leaving children to navigate between two worlds: the adult world of public health restrictions and that of their childhood. Despite challenges and lost childhood opportunities, children emerged as competent social agents and responsible citizens. Planning for future pandemics should include policies and practices that balance public health needs with the protection of children's rights.

The voices of children and young people during COVID-19: A critical review of methods.

AIM: Critically review research methods used to elicit children and young people's views and experiences in the first year of COVID-19, using an ethical and child rights lens. METHODS: A systematic search of peer-reviewed literature on children and young people's perspectives and experiences of COVID-19. LEGEND (Let Evidence Guide Every New Decision) tools were applied to assess the quality of included studies. The critical review methodology addressed four ethical parameters: (1) Duty of care; (2) Children and young people's consent; (3) Communication of findings; and (4) Reflexivity. RESULTS: Two phases of searches identified 8131 studies; 27 studies were included for final analysis, representing 43,877 children and young people's views. Most studies were from high-income countries. Three major themes emerged: (a) Whose voices are heard; (b) How are children and young people heard; and (c) How do researchers engage in reflexivity and ethical practice? Online surveys of children and young people from middle-class backgrounds dominated the research during COVID-19. Three studies actively involved children and young people in the research process; two documented a rights-based framework. There was limited attention paid to some ethical issues, particularly the lack of inclusion of children and young people in research processes. CONCLUSION: There are equity gaps in accessing the experiences of children and young people from disadvantaged settings. Most children and young people were not involved in shaping research methods by soliciting their voices.

School reintegration following hospitalisation for children with medical complexity and chronic disease diagnoses: a scoping review protocol.

INTRODUCTION: Schools play a significant role in children's social, emotional and intellectual well-being. For children with medical complexity (CMC) and chronic disease diagnoses (CDD), an absence from school due to prolonged hospitalisation places them at risk for greater social exclusion and poorer academic outcomes than their healthy counterparts. Processes that support the school reintegration of children with complex and chronic medical conditions currently lack consistency and identified evidence-based practices. This scoping review aims to integrate the relevant literature on current reintegration procedures as well as assess stakeholders' perceived challenges related to children with CMC and CDD's return to school following hospitalisation. Finally, information will be synthesised regarding parental and child involvement in reintegration strategies. METHODS AND ANALYSIS: The current scoping review follows the five-stage framework proposed by Arksey and O'Malley (2005). The search syntax will be applied in Medline, Web of Science, PsycInfo, Education Resource, ERIC, CINAHL and SocIndex. Peer-reviewed journal articles will be included without the restriction of publication year or language. However, only children and adolescents aged 4-18 with CMC and CDD, who have been out of school for 2 weeks or more and reintegrated into a non-hospital school setting will be included. Articles will be screened by two authors based on the outlined eligibility criteria. Data will be summarised qualitatively and where applicable, visualisation techniques such as tables, graphs and figures will be implemented to address approaches, strategies and outcomes related to reintegration to school following hospitalisation. ETHICS AND DISSEMINATION: The current study comprises available publications and does not collect primary data. For this reason, ethics approval is not necessary. The results of this scoping review will be prepared and submitted for publication in a peer-reviewed journal and presented at future conferences to key stakeholders focusing on educational accessibility and inclusion.

"Everybody Makes Mistakes": Children's Views on Medical Errors and Disclosure.

PURPOSE: The aim of this study was to explore the views of chronically-ill pediatric patients on medical errors and disclosure processes. DESIGN AND METHODS: Semi-structured, qualitative interviews were conducted with twenty pediatric patients. Participants comprised ten children (8-12 years) and ten adolescents (13-18 years). Multiple methods using qualitative approaches were applied to explore and elicit views on medical errors, disclosure and recommendations for patient safety. For the children, art and play-based methods along with visual aids and vignettes were used to facilitate discussion. Older participants predominantly engaged in discussing the issue of medical errors through an examination of vignettes representing levels of harm. RESULTS: Participants revealed a range of perspectives including a strong desire to be told of errors. While they wanted those responsible for the error to be held accountable, they acknowledged that everyone makes mistakes. Children's rights and participation in patient safety as well as the existence of secret errors emerged spontaneously through the data analysis. CONCLUSIONS: Chronically-ill children want to know about errors, from the person responsible for the error, and consider apologies and genuine remorse to be critical for coping. Children acknowledge that disclosure requires a case-by-case analysis. PRACTICE IMPLICATIONS: The results have implications for how we view disclosure processes with children and how to engage them in patient safety.

The impact of Snoezelen in pediatric complex continuing care: A pilot study.

PURPOSE: Snoezelen is an environment that provides sensory stimulation to individuals in health care and rehabilitative settings. With the presentation of various instruments and materials, individuals can encounter a range of sensory experiences including visual, tactile, and auditory with the purpose of inducing relaxation and restoration. Little is known about how children and adolescents experience this form of sensory stimulation, particularly those in complex continuing care who may have limited verbal and mobility capacity. METHODS: This pilot study examined autonomic physiological responses and observational data on five children and adolescents in complex continuing care within a large rehabilitation hospital. Responses to Snoezelen and watching television were compared against baseline data collected during pre-intervention phases. RESULTS: Using a single-subject design, this preliminary study found that individual participant responses varied considerably. Four of the five participants exhibited significant changes between sessions on one or two distinct physiological measures. The authors call on additional studies that apply unique and multiple methods capable of accessing the preferences of children and adolescent in rehabilitative care. CONCLUSIONS: As an outcome, contributions to evidence-based practice can be made while supporting children's participation rights in health care decision making.

Views of children, parents, and health-care providers on pediatric disclosure of medical errors.

Despite the prevalence of medical errors in pediatrics, little research examines stakeholder perspectives on the disclosure of adverse events, particularly in the case of children's own perspectives. Stakeholder perspectives, however, are integral to informing processes for pediatric disclosure. Building on a systematic review of the literature, this article presents findings from a series of focus groups with key pediatric stakeholders where perspectives were sought on the disclosure of medical errors. Focus groups were conducted with three stakeholder groups. Participants included child members of the Children's Council from a large pediatric hospital (n = 14), parents of children with chronic medical conditions (n = 5), and health-care providers including physicians, nurses, and patient safety professionals (n = 27). Children acknowledged various disclosure approaches while citing the importance of children's right to know about errors. Parents generally identified the need for full disclosure and the uncovering of hidden errors. Health-care providers were concerned about the process of disclosure and whether it always served the best interest of the child or family. While some health-care providers addressed the need for more clarity in pediatric policies, most stakeholders agreed that a case-by-case approach was necessary for supporting variations in how medical errors are disclosed.

'Kids need to talk too': inclusive practices for children's healthcare education and participation.

AIMS AND OBJECTIVES: To examine how children with chronic medical conditions view healthcare education and decision-making and to propose the application of the universal design for learning in paediatric settings. BACKGROUND: Children and adolescents with chronic medical conditions tend to be excluded from healthcare decision-making. In schools, the universal design for learning promotes access to education and participation in school communities for all children, regardless of their disabilities or medical needs, rendering it an appropriate model for children's participation in healthcare decision-making. DESIGN: This article presents findings from a qualitative study with 26 children and adolescents with chronic medical conditions about their views and experiences with healthcare education and decision-making. METHODS: Twenty-six children and adolescents with chronic medical conditions were interviewed using semi-structured interviews. RESULTS: Findings provide evidence that clinical practices often fail to provide equal opportunities for paediatric patients to understand their condition, share their views and/or participate in decisions regarding their care. CONCLUSIONS: In response to ongoing concerns about paediatric decision-making, we propose that the universal design for learning be adapted in paediatrics. The model presents exemplary programmes as inclusive, accounting for the needs of all children through multiple means of engagement and expression. RELEVANCE TO CLINICAL PRACTICE: A discussion of how the principles of universal design for learning could be applied in paediatric settings is offered for the purpose of advancing ethical and psychosocial care for all children regardless of their age, developmental capacity or condition.

Patient disclosure of medical errors in paediatrics: A systematic literature review.

Medical errors are common within paediatrics; however, little research has examined the process of disclosing medical errors in paediatric settings. The present systematic review of current research and policy initiatives examined evidence regarding the disclosure of medical errors involving paediatric patients. Peer-reviewed research from a range of scientific journals from the past 10 years is presented, and an overview of Canadian and international policies regarding disclosure in paediatric settings are provided. The purpose of the present review was to scope the existing literature and policy, and to synthesize findings into an integrated and accessible report. Future research priorities and policy implications are then identified.

Les erreurs médicales sont courantes en pédiatrie. Cependant, peu de recherches abordent leur processus de divulgation en milieu pédiatrique. La présente analyse systématique des projets de recherche et de politique les plus récents a porté sur les données probantes relatives à la divulgation des erreurs médicales auprès de patients d'âge pédiatrique. Les recherches révisées par les pairs tirées d'une série de revues scientifiques des dix dernières années sont présentées, de même qu'un aperçu des politiques canadiennes et internationales sur la divulgation en milieu pédiatrique. La présente analyse visait à évaluer les publications et les politiques existantes et à synthétiser les résultats dans un rapport intégré et accessible. Les prochaines priorités de la recherche et leurs conséquences sur les politiques sont ensuite exposées.

Pediatric perspectives on diabetes self-care: a process of achieving acceptance.

We conducted this qualitative study to explore children's and adolescents' perspectives about diabetes self-care, their knowledge of diabetes, and their emotions associated with having the disease. Drawing on the new sociological approach that acknowledges children's competence in discussing complex issues that concern them, we conducted individual interviews with a cross-sectional sample of 48 patients between the ages of 5 and 18 years. We recruited participants from a diabetes outpatient clinic within a large pediatric hospital in one of Canada's major urban centers. In this article, we present data from the following major themes: self-care, knowledge, and emotions. Through an in-depth analysis of these integrated themes, we offer validation that emotional support, along with disease education, provides supportive conditions for engaging in self-care and a process of acceptance.

Distraction techniques for children undergoing procedures: a critical review of pediatric research.

Pediatric patients are often subjected to procedures that can cause pain and anxiety. Although pharmacologic interventions can be used, distraction is a simple and effective technique that directs children's attention away from noxious stimuli. However, there is a multitude of techniques and technologies associated with distraction. Given the range of distraction techniques, the purpose of this article was to provide a critical assessment of the evidence-based literature that can inform clinical practice and future research. Recommendations include greater attention to child preferences and temperament as a means of optimizing outcomes and heightening awareness around child participation in health care decision making.

Evaluation of videophone communication for families of hospitalized children.

This study evaluated videophones as a means of support among families who had limited access to their hospitalized children due to geographic separation. These videophones facilitated video-mediated communication between the hospital and the family home. Qualitative interviews explored the outcomes and processes related to videophone use for a subsample of 14 participants. Content analysis identified six themes: being in hospital far from home is "draining," vicarious growth and the recalibration of priorities, "it's like you're right there," source of happiness in a hard place, ease of videophone use, and limitations of the videophone. Participants reported that family separation during pediatric hospitalization was very difficult, and use of the videophones mitigated these effects through decreasing feelings of isolation and anxiety, and increasing feelings of connection between family members.

Pandemic planning in pediatric care: a website policy review and national survey data.

OBJECTIVES: This study investigates current policies, key issues, and needs for pandemic planning in pediatrics in Canada. METHODS: Online pandemic plans from national, provincial and territorial government websites were reviewed to identify: plans for children and families, and psychosocial and ethical issues. A survey was administered to gather participants' perspectives on the needs in pediatric planning, as well as important elements of their organizations' and regions' pandemic plans. A thematic analysis was conducted on qualitative survey responses. RESULTS: The majority of existing plans did not adequately address the unique needs of pediatric populations, and mainly focused on medical and policy concerns. Several gaps in plans were identified, including the need for psychosocial supports and ethical decision-making frameworks for children and families. Similarly, survey respondents identified parallel gaps, in their organization's or region's plans. CONCLUSIONS: Although many plans provide guidelines for medical and policy issues in pediatrics, much more work remains in psychosocial and ethical planning. A focus on children and families is needed for pandemic planning in pediatrics to ensure best outcomes for children and families.

Paediatric pandemic planning: children's perspectives and recommendations.

Children, as major stakeholders in paediatric hospitals, have remained absent from discussions on important healthcare issues. One critical area where children's voices have been minimised is in the planning for future pandemics. This paper presents a subset of data from a programme of research which examined various stakeholder experiences of the severe acute respiratory syndrome (SARS) outbreaks of 2003. These data also generated recommendations for future pandemic planning. Specifically, this paper will examine the perspectives and recommendations of children hospitalised during SARS in a large paediatric hospital in Canada. Twenty-one (n = 21) child and adolescent participants were interviewed from a variety of medical areas including cardiac (n = 2), critical care (n = 2), organ transplant (n = 4), respiratory medicine (n = 8) and infectious diseases (patients diagnosed with suspected or probable SARS; n = 5). Data analyses exposed a range of children's experiences associated with the outbreaks as well as recommendations for future pandemic planning. Key recommendations included specific policies and guidelines concerning psychosocial care, infection control, communication strategies and the management of various resources. This paper is guided by a conceptual framework comprised of theories from child development and literature on children's rights. The authors call for greater youth participation in healthcare decision-making and pandemic planning.

Pediatric epidemic crisis: Lessons for policy and practice development.

OBJECTIVES: This research study addresses health policy and patient care considerations, and outlines policy and practice implications resulting from a crisis in a pediatric setting. This crisis, an epidemic outbreak of Severe Acute Respiratory Syndrome (SARS), dramatically impacted the delivery of health care in Canada. Despite the passage of time since the last diagnosed case of SARS in April 2004, researchers have warned the global community to be prepared for future outbreaks of SARS or other infectious diseases. METHODS: Qualitative interviews were conducted with 23 participants representing key stakeholder groups: (a) pediatric patients with probable or suspected SARS, (b) their parents, and (c) health care professionals providing direct care to SARS patients. RESULTS: Participants conveyed key areas in which health policy and practice were affected. These included the development of communication strategies for responding to SARS; easing vulnerability among all stakeholders; and the rapid development of practice guidelines. CONCLUSION: Given the continuing threat of current and future airborne viruses with potential for epidemic spread and devastating outcomes, preparedness strategies are certainly needed. Effective strategies in pediatrics include practices that provide family centered care while minimizing disease transmission. Toward this end, lessons learned from previous outbreaks merit consideration and may inform future epidemics.

The life threatened child and the life enhancing clown: towards a model of therapeutic clowning.

In the last decade, there has been a rapid growth in the presence of clowns in hospitals, particularly in pediatric settings. The proliferation of clowns in health care settings has resulted in varying levels of professionalism and accountability. For this reason, there is a need to examine various forms of clowning, in particular therapeutic clowning in pediatric settings. The purpose of this article is to address what therapeutic clowning is and to describe the extent to which it can provide a complementary form of health care. In an attempt to apply theory to practice, the article will draw upon the experiences of a therapeutic clown within a pediatric setting while providing a historical and theoretical account of how clowns came to be in hospitals. Toward this end, a proposed model of therapeutic clowning will be offered which can be adapted for a variety of settings where children require specialized forms of play in order to enhance their coping, development and adjustment to life changes. Finally, current research on clowning in children's hospitals will be reviewed including a summary of findings from surveys administered at the Hospital for Sick Children.

Perceptions of online support for hospitalized children and adolescents.

This study identifies perceived outcomes following hospitalized children's participation in a pediatric online support network. Nineteen participants were interviewed, including child and adolescent patients who had used the network while in hospital, their parent/family caregiver, and a familiar health care provider. This triadic sampling approach provided a range of stakeholder perceptions. Results convey a wide spectrum of benefits and challenges in accessing and utilizing an online support network for hospitalized children. Participation in the network was identified as a means of fostering pediatric patient enjoyment, education, connection with peers, and coping. Information, social connection and distraction served as catalysts fostering positive outcomes for children. Identified barriers to network participation included inaccessibility and limited availability of computers, issues with technology, and discomfort with online interaction. Findings advance understanding of online networks as supportive resources for seriously ill children and their families.

Bowlby and Robertson revisited: the impact of isolation on hospitalized children during SARS.

Psychosocial issues related to pediatric isolation remain relevant to both clinical practice and research. The early theories of Bowlby and Robertson are central to this discussion for it was predominantly their work that elicited several policy changes aimed at improving psychosocial care in pediatric settings. Recognizing the significant effects of isolating hospitalized children is just as relevant today where serious infectious diseases can lead to separation of family members. An ethnographic, qualitative study examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 23 participants: five children, 10 parents, and eight health care providers. Data analyses illuminated a range of perceived experiences for this triadic sample. Themes related to the effects of social isolation on children were predominant. They included emotional upheaval, changes in parental and professional roles, and familial experiences following hospital discharge. Finally, the paper draws on the findings of the present study and other recent work in offering recommendations for effective clinical approaches in the event of future outbreaks.